Prognostic and Goals-of-Care Communication in the PICU: A Systematic Review

Objectives: To describe challenges experienced by parents of children hospitalized in the PICU during PICU admission as reported by family navigators. Design: A preplanned secondary analysis of open-response data coded via inductive qualitative approach from the Navigate randomized controlled trial (RCT) dataset (ID NCT02333396). Setting: Two university-affiliated PICUs in the Midwestern United States as part of an RCT. Patients: Two hundred twenty-four parents of 190 PICU patients. Interventions: In 2015–2017, trained family navigators assessed and addressed parent needs, offered weekly family meetings, and provided post-PICU discharge parent check-ins as part of a study investigating the effectiveness of a communication support intervention (“PICU Supports”). Measurements and Main Results: We analyzed qualitative data recorded by family navigators weekly across 338 encounters. Navigators described families’ “biggest challenge,” “communication challenges,” and ways the team could better support the family. We used an inductive qualitative coding approach and a modified member-checking exercise. The most common difficulties included home life, hospitalization, and diagnosis distress (45.2%, 29.0%, and 17.2% of families, respectively). Navigators often identified that parents had co-occurring challenges. Communication was identified as a “biggest challenge” for 8% of families. Communication challenges included lack of information, team communication, and communication quality (7.0%, 4.8%, and 4.8% of families, respectively). Suggestions for improving care included better medical communication, listening, rapport, and resources. Conclusions: This study describes families’ experiences and challenges assessed throughout the PICU stay. Family navigators reported families frequently experience stressors both internal and external to the hospital environment, and communication challenges between families and providers may be additional sources of distress. Further research should develop and assess interventions aimed at improving provider-family communication and reducing stressors outside the hospitalization itself, such as home life difficulties.

Section: Resourcesmentioning

confidence: 82%

Challenges of Families of Patients Hospitalized in the PICU: A Preplanned Secondary Analysis From the Navigate Dataset*

Tager,

Hinojosa,

LiaBraaten

et al. 2023

“…Furthermore, implementing a bundled consent upon admission also creates a semi-structured discussion of the nature and likely trajectory of critical illness which may result in a more realistic parental assessment of the severity of their child’s illness. Additionally, such early prognostic discussions are generally rated as favorable by parents and have shown to aid in medical decision making (18).…”

Section: Discussionmentioning

confidence: 99%

The Effects of Expectation Setting and Bundle Consent on Acute Caregiver Stress in the PICU: A Randomized Controlled Trial

Goldstein

Karam

Ferguson

2023

OBJECTIVES: Having a child admitted to the PICU is a stressful experience for parents and can have long-term negative mental health consequences. The objective was to determine if formalized expectation setting and bundled consent for invasive procedures upon admission impacts the acute stress burden on parents. DESIGN: Prospective cluster randomized controlled trial. SETTING: Single-center, tertiary PICU. SUBJECTS: Parents/guardians of patients, 0–18 years old, admitted to PICU. INTERVENTIONS: During experimental weeks, all patients admitted to PICU were bundled-consented for common procedures and given a novel unit introductory letter and “Common Procedures Explained” document. During control weeks, all patients were consented for invasive procedures with separate consents for each procedure. Parents then completed a demographic survey and Stress Overload Scale-Short (SOS-S) 48–72 hours after their child’s admission. For each participant, the SOS-S generates a Personal Vulnerability (PV) score and an Event Load (EL) score. Parents’ perception of the life-threatening nature of their child’s condition was also evaluated. MEASUREMENTS AND MAIN RESULTS: Over 73 weeks, 1,882 patients were screened and 261 consented to the SOS-S. Median PV score was 10.4 in the control group and 9.1 in the experimental group (p = 0.15). Median EL score was 11.3 for the control group and 10.5 in the experimental group (p = 0.42). Adjusting for demographic variables and severity of illness, there was no independent association between either PV or EL and bundled consent. However, a parent’s perception of threat-to-life was significantly related to the allocated group (p = 0.036), which resulted in a decreased percentage of parents who rated their child’s illness as “Extremely” life-threatening (experimental group, 17% vs control group, 26%). CONCLUSIONS: This study did not demonstrate a decrease in stress when bundled consent was obtained. However, this intervention decreased the parents’ perceived severity of illness. Further multicenter studies are needed to evaluate the effects of bundled consent on parents.

“…discussion on how to maximize the benefits of ethics consultation (4). Read this material with the 2023 systematic review on prognostic and goals of care communication in the pediatric intensive care unit (12), and the 2022 reports on ECMO candidacy decisions (13)(14)(15).…”

Section: Is Pards In Immunocompromising Conditions (Icc) Fundamentall...mentioning

confidence: 99%

Editor’s Choice Articles for April

Tasker

2024

A nother month of top-rated specialist articles in Pediatric Critical Care Medicine (PCCM). My three April 2024 Editor's Choice articles, each with editorials, cover familiar research themes in the Journal. For a change, alongside each of these highlights, I include some educational material usually found in the PCCM Connections section. The topics are pediatric acute respiratory distress syndrome (PARDS) (1, 2), formal ethics consultation in cases of extracorporeal membrane oxygenation (ECMO) (3, 4), and hemodynamics in cannulation for ECMO during active cardiopulmonary resuscitation (ECPR) (5, 6).